Savannah's Journey

Savannah’s journey through life began six years ago.  Savannah was born with VACTERL  Association which is a rare disease affecting several body functions.  VACTERL association (also VATER syndrome) refers to the non-random co-occurrence of birth defects Vertebral anomalies, Anal atresia, Cardiac defects, Tracheoesophageal fistula and/or Esophageal atresia, Renal anomalies and Limb defects. The reason it is called an association, rather than a syndrome is that while the complications are not pathogenically related they tend to occur together more frequently than expected by chance.

 

Savannah spent the first three months of her life in the NICU at Children’s Hospital of Wisconsin.  It was there that we were first introduced to the Special Needs program and Dr. Gordon.   Savannah had several surgeries while in the NICU.  She had surgery to repair her T.E. fistula, belly button hernia repair, perforated anus, and emergency surgery to her small intestine, a portion of which had twisted losing blood flow and died.  Savannah came home from the hospital with a feeding tube, ileostomy, colostomy and a central line.

Savannah was doing well at home but in January of 2008 spiked a fever and went back into the hospital.  It was at this time that we found out that Savannah’s liver was failing.  In March of 08 Savannah’s liver has failed and she went to number one on the transplant list.  Six days later, Savannah underwent a successful liver transplant.  Due to the size of her old liver her lung function was compromised.  Savannah needed a tracheotomy and came home on a ventilator nine months later.

 

Since then Savannah has been in and out of Children’s hospital correcting the various complications associated with the VACTERL Association.  Savannah has had open heart surgery, both of her femurs surgically broken and repositioned, as they did not meet up with her pelvic sockets.  Savannah had re-implantation of her ureters, for urinary tract problems.  Savannah was also the first child in Wisconsin and the third in the United States to have angioplasty of her portal vein from her spleen to her liver, saving her from another surgery.

This year Savannah entered the first grade and is doing well.  Savannah still does not walk or feed by mouth but she is set up to start the feeding team at Children’s hospital as well as physical therapy for walking.

 

The Special Needs program at Children’s hospital has been vital to Savannah’s continued success and growth.  I believe that without their ongoing care and coordination of Savannah’s medical status she would not be as far along as she is today and for this we are very thankful.     

Please donate to JALF to assist with their misson to support the Special Needs Program at Children's Hospital of Wisconsin. Donate now.

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